A. Alphonse Prabhu Roy, 60, was diagnosed at a young age with two chronic autoimmune disorders, Lupus and Sjogren’s Syndrome, with multiple complex symptoms, the most challenging being dry mouth and brain fog. Narrating his experience, he said both illnesses need to be handled carefully or else they can severely impact work and home.
You have been the general manager of a public sector oil company for many years. Please could you tell us a bit about your current work and where do you live?
After my retirement in 2022, I decided to spend a year with my family and then to run a small business to keep myself engaged. I live in Chennai and love to spend time to take care of plants and do household chores which keeps me fit as well. Nowadays, I travel a lot around visiting friends and relatives.
Could you give us some details about your health and your diagnoses of two autoimmune disorders?
It all began in 1995, when I was 32 years of age. I suffered a continuous fever that seemed to be without a cause. After about 30 days of fever, body pain and joint pain also started. I was admitted to a hospital and the physician after testing me for all ills including HIV, identified that I may be suffering from SLE (Systemic lupus erythematosus). I was discharged and advised strictly not to stop the prescribed medicines including steroids.
I got fever again in 1998 when I was posted in Vellore and the episode was similar. So I visited CMC, where Dr AM Cherian concluded the diagnosis as SLE and I was advised 3 things:
- Never miss your medicine even for a single day.
- Visit CMC at a 3 monthly interval or as advised.
- Observe your body for symptoms and report.
He also reinforced the seriousness by saying, people with SLE can live more than 10 years if they adhere to the treatment plan. This was enough fear to force me to adhere to his 3 suggestions.
A lupus patient typically undergoes repeated cycles of getting sick and recovering, some with cause and some without. There have been 3 more prolonged fever episodes subsequently, which put me on a learning experience, to observe my body responses more carefully so that I avoid these flare ups and can improve my life.
One of the peculiar problems I suffered was the abnormal hunger that struck me for a month and then subsided without any identifiable cause. Issues such as stones in salivary gland, depression-like feelings that led me to a psychiatrist, severe fatigue, brain-fog that poses challenges at work are some of the adverse and bad effects of Lupus.
Currently I don’t have any of above issues for almost two years except for instances of fatigue and brain-fog and stiffness of fingers. I am now not taking steroids and instead taking medicines for autoimmune conditions and osteoporosis.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. Were you confused initially about your symptoms?
During school days I used to get swelling of salivary glands which we thought as mumps and treated every time without deeper investigation due to lack of awareness. Later I had difficulty in eating dry food such as biscuits and I never thought this as a problem. I began to lose appetite because I could not eat well due to dry mouth which I never understood. I also had severe joint pains for which I took homeopathic treatment and had some symptoms like fingers feeling cold and a feeling of pain in the bone. I used to often suffer from urinary tract infection (UTI) and rashes which I presumed to be due to lack of water intake, with my dry mouth justifying it.
Until the fever I suffered in 1995, I had no clue why I was not able to eat dry food and why I always preferred liquid rather than solid food. In 1995 when I was 32 years old, I suffered fever for 30 days as mentioned earlier and the general physician at Mangalore identified that I may have SLE and put a question mark in my discharge summary. The fever initially was very rhythmic in timing itself between 3PM to 11PM which later became high temperature with excruciating full body pain.
I was in a way lucky that I was diagnosed early by the physician at Mangalore and later confirmed by CMC. My visit to CMC became the turning point for me as I got the right advice both in terms of medicine and how I should change my lifestyle.
What are some of the potential complications of Lupus, and how are they treated?
The complication of Lupus is that it is not a single symptom disease. It throws up symptoms such as brain fog, fatigue, abnormal hunger feeling which had no upfront solution and seems to have no conclusive diagnosis for these symptoms.
The involvement of softer tissues is a big challenge and hence in the early days itself CMC doctors advised me to report if I get any symptom such as rashes, joint pains, fever etc. The disease affects kidney, brain, heart, lung, blood vessels and even skin. Therefore it became very important that I take care to avoid strain while I sincerely go about my work. It’s like stress is ok while strain is bad.
The first indication of strain for me is low grade fever that does not subside for days. If that happens, my medicines are adjusted by doctor to reduce my inflammation and I become normal.
Relief is largely dependent on lifestyle changes, identifying the causes by patient himself by self-observation, predicting onset of fatigue etc. These complications make life difficult at home, at work and in social interactions.
What advice would you like to give others living with Lupus?
- Be observant to your body. Prevent repetitive onset of flares, because it worsens your body and your social life. Take care not to allow those things that cause strain to your body such as Sun exposure, dehydration, stressful thoughts, lack of rest etc.,.
- On positive side remain happy, socialise and tell friends in an understandable manner about your disease so that they help you destress and also take care.
- Go to same doctor lifetime. For every problem visit Rheumatologist and not just various general physicians and other specialists without rheumatologist’s advice/recommendation.
Self-observation and communicating to doctor correctly without exaggeration or downplaying is very essential for deciding correct course of treatment.
What are the difficulties of Sjogren’s, for example regarding diagnosis and treatment?
Lupus and Sjogren’s have many common symptoms. Simple differentiation in my understanding is that Lupus strikes soft tissues and Sjogren’s strikes glands. As auto immune disease both Lupus and Sjogren’s are treated using steroids, NSAIDs (Non-steroidal anti-inflammatory drugs) and now DMARDs (Disease-modifying antirheumatic drugs)
A few years after my diagnosis for Lupus, Doctor wanted to rule out Sjogren’s as I complained of acute dry mouth at some point in time. So I was sent for tear test (for dry eyes which I had no complaint) and for lip biopsy. I was told that the extent of inflammation of glands that produce saliva and tears can be identified through lip biopsy. It came out that I had inflammation in gland and also I did not produce enough tears in my eyes. CMC could identify the disease even before its symptoms could trouble me. I was then advised for eye drops which helped me to save my eyes.
Dry mouth has been my biggest challenge because it greatly affects my eating habit and is a disturbance at night when I wake up with tongue stuck up against the roof of the mouth.
What are some of the biggest challenges of living with two chronic illnesses?
My survival is due to my spouse, who is very understanding, CMC and God. Multiple hospital visits and seeing almost all departments in a hospital are certainly tiresome for any family member. Every day there are difficulties such as dry mouth, dry eyes, joint pain, fever etc., which one can go through in life and family is very concerned and disturbed as well.
For me, there have been two big life-disabling impactful events due to Lupus
- The joint pain in finger, wrist and elbow are the most challenging. I wouldn’t be able to even pick up a piece of dosa / chapathi using the fingers and it is that painful. When this episode repeated, I would feel so very frustrated. Thank God, now I am out of all this, and my joints are doing well now.
- Brain fog is another challenge which makes it difficult to interact with people and since I look normal, it would be presumed by others as indifferent behaviour. When I suffer brain fog or fatigue, even a small instruction (such as open the door) would seem like a mountainous task. Once this brain fog reached such an extreme that I suffered a severe anxiety disorder for which I was admitted and treated in a hospital but luckily, I recovered soon.
Are there any lifestyle changes that you have made to help manage Lupus and Sjögren symptoms?
Yes. Some of the basic lifestyle changes I tried to put in practice are:
- I don’t go out in Sun as it causes dehydration, skin rashes and increase inflammation.
- I try not to strain myself while doing my best at work.
- I never miss my medicine even for a day.
- I try calming my mind against anger and worry. These two emotions aggravate brain fog and fatigue. Prayer is also a form of meditation which can be practiced easily.
- I tell people/colleagues when I am unwell so that they understand my slow reactions/responses.
- I never made an excuse at work because of my on-going illness and challenges. Of course, if I am seriously ill, then I cannot attend work. On a normal or sub-normal day, no excuse. This ensures that superiors won’t feel that I am a sick guy.
This invisible disease must be handled carefully or else it would impact work and home.
Have you been able to identify any Support Group for Lupus and sjögren in Chennai?
In the initial days, I had no other patient to refer. But doctors at CMC were excellent in patient-support by clearly explaining about the disease, risk of life and how to avoid organ failure.
There is no support group for Lupus or Sjogren’s in Chennai. I am a member of Sjogren’s’ India run by Ms Kirtida Oza. She is doing a great service through connecting the patient group with doctors and also through timely interaction in WA group which ensures general emotional and informational support on various patient related day-to-day issues.
